Wasting expertise and wasting lives

My disability, Friedreich’s Ataxia, has over time severely changed my ability to participate in “my life”.

The disease currently leaves me with indecipherable slurred speech, severe mobility restrictions (wheelchair bound since age 23 and suffering from profoundly unco-ordinated movements - an example of this is a very slow typing speed of about three words a minute) and a range of deformities, only one of which is classified as severely disabling.

For example, a scoliosis (twisted spine or “hunch back”) was operated on in 1986 to stop the speed of deterioration, but this in turn created new problems: my spine from the top of my neck to the bottom of my tail bone is supported by stainless steel rods, making it inflexible - it can’t bend. But it was either have the operation or die because my spine was bending rapidly and would have caused my heart to get squashed.

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I also have a cardio-myopathy (a profoundly deformed heart) and nystagmus (weakness in the muscles behind the eyes causing them too constantly shake), and many other medical deformities directly related to Friedreich’s Ataxia.

In spite of this, for most of my adult life, I have lived independently in Dandenong. I am now 45. And during this time I believe I have acted as role model for many people with severe physical disabilities. I have been studying at a post-secondary level since the age of 23. I completed an Associate Diploma in Business Studies (Accounting) at the age of 27. After this I attended Monash University for ten years and was awarded a Bachelor of Arts, a Bachelor of Business (Accounting), and a Master of Arts. My last academic association was with the University of Melbourne, where I completed my PhD in December 2005.

By doing and achieving all this, I feel I am certainly fulfilling my obligation to contribute to society.

During this time I have always tried to play a good hand with the cards life has dealt me. The disease has significantly progressed since I first started living on my own in 1989, especially during the last five years when I was studying for my PhD.

But now that I have my PhD I have harder yards to accomplish: that is to participate in the disability sector as a person with a PhD. I have much personal experience of public policy as it pertains to those with severe physical disabilities that could assist in shaping future directions of public policy. However my attempts to participate have been restrained by the Department of Human Services (DHS).

The DHS have found yet again, in their wisdom, to refuse me the necessary personal care hours I need to capitalise on my PhD within the disability sector and also to help slow down my medical deterioration. This further throws into question the stated claims of the State Disability Plan to provide for human rights, dignity and self-determination, when individuals are denied access to necessary personal care that would improve their quality of life.

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In previous years, I was granted a sufficient number of hours of personal care to keep my head above water, even allowing for deterioration in my condition. But at that time all I required to fulfill my initial needs was to maintain the ability to be an exceptional student (mostly working on the computer for eight hours a day).

Now I have finished my degree, however, and this along with my physical deterioration has dramatically changed my personal care needs.

For example, this was Support and Choices response to what I considered a reasonable request for additional personal care hours:

About the Author

Peter Gibilisco was diagnosed with the progressive neurological condition called Friedreich's Ataxia, at age 14. The disability has made his life painful and challenging. He rocks the boat substantially in the formation of needed attributes to succeed in life. For example, he successfully completed a PhD at the University of Melbourne, this was achieved late into the disability's progression. However, he still performs research with the university, as an honorary fellow. Please read about his new bookThe Politics of Disability.